A Marijuana Feuled Feud
Earlier this year, another home testing DNA kit became available, although you may not have heard of it. The release of the kit follows a four-year feud between Alice Moon, a cannabis influencer and Ethan Russo, the researcher developing the kit. This kit tests for CHS, a very rare condition that can happen after heavy, long-term, marijuana use. The condition, Cannaboid Hyperemesis Syndrome is marked by the onset of intense vomiting for weeks on end. When Alice Moon was diagnosed, it took a while for her to come to terms with her condition as she had made her living writing reviews of edibles for years. Her personal brand was “cute blond girl eating edibles” and she had quickly garnered about 14,000 followers before falling ill with CHS. To get a feel for Alice Moon as a person, you can check out her online submission form for a prospective boyfriend.
A CHS diagnosis usually takes a long time to arrive to, as it’s based on symptoms without any clear biomarkers. Those who suffer from this rare condition have spent around $94,000 for hospital visits and care before arriving to a CHS diagnosis. Some have had gallbladders removed or other major procedures before arriving to CHS diagnosis. It’s largely considered that CHS is a result of TCH on the digestive tract, and that with heavy exposure the body’s response to TCH changes over time. Ethan Russo is a 70 year-old psychopharmacologist and neurologist who has been studying the effects of weed since the 1990s. His research has helped pave the way for medical marijuana for migraines and medication for seizures in babies. In 2019 he reached out to Alice Moon if she would participate and help find subjects in a study for CHS. Russo’s CHS interest was in developing a genetic diagnosic test for the very rare CHS disease. Russo is a respected researcher, but genetic testing for CHS may be a dead end. Vincenzo Di Marzo, a biochemist who studies cannabinoids, molecular genetics, and the microbiome at the Université Laval in Quebec states: “As far as I know, this is still science fiction. It doesn’t tell you anything about the expression and the function of the genes.” That, he says, is crucial in understanding how someone might respond to various cannabinoids.
When Ethan Russo recounted reaching out to Alice Moon for assistance in studying CHS he says: “She was complaining and crying that nobody takes her seriously, and I said to her, ‘In order for people to take you seriously, let’s add some science to it.’” Shortly after, he sent her a survey, which she filled out and returned but with the stipulation that questions on it needed to be rephrased before she would send it to her CHS community. Moon specified, “The question ‘are you experiencing nausea’ really stood out to me as it is not a clear question. I am not experiencing nausea, but I did for two years. I answered no because I stopped using cannabis a year ago. That was just one of many questions that was worded so poorly that it could be misinterpreted. By not asking clear questions, your data will be flawed.” Moon also pointed out that in the survey HIPAA was misspelled as HIPPA (an issue I personally struggle with as well). The correspondence got increasingly testy and flew off the rails when Moon found out she didn’t qualify to participate in the study that she had sent out to her CHS followers. She took to social media to personally attack and discount the study she had previously promoted. Out of the 500 CHS surveys that had been completed, an algorithm had selected 250 subjects based on qualifications. Because of Moon’s outrage over not being selected, out of the 250 who qualified, 99 subjects agreed to receive test kits. Out of the 99 subjects, 28 people actually returned the test kit.
And then, in a logical progression... Russo continued the study. In the very small sample size, at first there was hopeful findings that a genetic trait was shared among the subjects with on closer examination it turned out to be misleading. It's a stretch to say the study established much of anything. In response to the social media war Moon was waging Russo remarked, “I hate to say it, but it seems like our patients with CHS, a lot of them are really crazy… the paranoia in this group is unbelievable.” Moon holds that Russo and the diagnostic company are trying to take advantage of the afflicted to either collect DNA samples or use them for profit as marijuana becomes corporate. Today you can buy Russo’s CHS diagnostic test for $199 based on the study with 28 participants and ubiquitous results for a condition many are skeptical even exists. The market for home tests has ballooned for wide scope of conditions including hormones, metabolism, food sensitivities, etc. This one is marked by a ridiculous feud but it shows us the subjectivity and in this particular case a juvenile lack of process going into the "at-home testing" market.